VCRC Clinical Outcomes Program

VCRC 临床结果计划

基本信息

  • 批准号:
    8919981
  • 负责人:
  • 金额:
    $ 2.5万
  • 依托单位:
  • 依托单位国家:
    美国
  • 项目类别:
  • 财政年份:
    2015
  • 资助国家:
    美国
  • 起止时间:
    2015-09-01 至 2019-08-31
  • 项目状态:
    已结题

项目摘要

The VCRC Clinical Outcomes Program leverages the network of VCRC sites with expertise in the clinical care of patients with vasculitis to conduct high-quality clinical outcomes research in rare diseases. Patients with different forms of vasculitis are comprehensively phenotyped at multiple time points in the disease course in both observational and clinical trial settings. The long-term goal of the VCRC Clinical Data Outcomes Program is to improve clinical outcomes of patients with all types of vasculitis through improved understanding of the natural history, epidemiology, and efficacy of therapeutic interventions. The objective of the program is to study clinical outcomes in parallel across seven primary types of vasculitis. The rationale to the approach is that multi-center research in rare diseases using standardized data collection practices is an efficient and effective method to conduct high-quality clinical outcomes research in rare diseases. The specific aims of this project are: 1. Maintain the infrastructure that supplies, stores and utilizes all clinical data collected in the VCRC Longitudinal Studies and clinical trials within the VCRC Clinical Data Repository for clinical outcomes research in vasculitis; 2. Conduct meaningful clinical outcomes research in vasculitis using prospectively-collected data in the following areas: natural history studies, clinical outcome studies, and outcome measure assessments. 3. Facilitate interaction among VCRC members focused on the use of clinical data that promotes the training of young investigators and the development of novel analytic approaches to rare disease research. By leveraging existing infrastructure within the VCRC, including the VCRC Longitudinal Studies, VCRC-led clinical trials, the VCRC Clinical Data Repository, and the expertise of the VCRC Steering Committee, the VCRC Clinical Data Outcomes Program overcomes challenges common to rare disease research. The collaborative effort required of the VCRC centers to complete initiatives within the VCRC Clinical Outcomes Program serves as a template for conducting research in rare diseases.
VCRC临床结局计划利用VCRC站点网络,在血管炎患者的临床护理方面具有专业知识,以进行罕见疾病的高质量临床结局研究。在观察性和临床试验环境中,在疾病过程的多个时间点对不同形式的血管炎患者进行全面的表型分析。VCRC临床数据结局计划的长期目标是通过提高对自然史、流行病学和治疗干预有效性的理解,改善所有类型血管炎患者的临床结局。该计划的目的是研究在七个主要类型的血管炎平行的临床结果。该方法的基本原理是,使用标准化数据收集的罕见病多中心研究 实践是在罕见病中进行高质量临床结局研究的高效和有效方法。 该项目的具体目标是: 1.维护供应、存储和使用VCRC纵向研究和VCRC临床数据存储库内临床试验中收集的所有临床数据的基础设施,用于血管炎临床结局研究; 2.使用在以下领域前瞻性收集的数据对血管炎进行有意义的临床结局研究:自然史研究,临床结局研究和结局指标评估。 3.促进VCRC成员之间的互动,重点关注临床数据的使用,促进年轻研究者的培训和罕见疾病研究新分析方法的开发。 通过利用VCRC内部的现有基础设施,包括VCRC纵向研究、VCRC领导的临床试验、VCRC临床数据存储库和VCRC指导委员会的专业知识,VCRC临床数据结局计划克服了罕见病研究中常见的挑战。VCRC中心完成VCRC临床结局计划内的举措所需的协作努力可作为开展罕见疾病研究的模板。

项目成果

期刊论文数量(0)
专著数量(0)
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会议论文数量(0)
专利数量(0)

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Peter A Merkel其他文献

Glucocorticoid Minimization in ANCA-Associated Vasculitis: An International Survey of Clinicians
ANCA 相关血管炎中糖皮质激素最小化:一项国际临床医生调查
  • DOI:
  • 发表时间:
    2024
  • 期刊:
  • 影响因子:
    3.9
  • 作者:
    D. Massicotte;M. Canney;Priscilla Karnabi;Peter A Merkel;Rachel B. Jones;Ruth J. Pepper;Alan D. Salama;V. Derebail;N. Milman;Mats Junek;C. Pagnoux;David R W Jayne;Michael Walsh
  • 通讯作者:
    Michael Walsh
Benralizumab versus Mepolizumab for Eosinophilic Granulomatosis with Polyangiitis.
贝那利珠单抗与美泊利珠单抗治疗嗜酸性肉芽肿性多血管炎。
  • DOI:
  • 发表时间:
    2024
  • 期刊:
  • 影响因子:
    158.5
  • 作者:
    Michael E. Wechsler;P. Nair;Benjamin Terrier;Bastian Walz;Arnaud Bourdin;D. Jayne;David J Jackson;F. Roufosse;L. Börjesson Sjö;Ying Fan;M. Jison;C. McCrae;S. Necander;A. Shavit;C. Walton;Peter A Merkel
  • 通讯作者:
    Peter A Merkel
The impact of treatment with avacopan on health-related quality of life in antineutrophil cytoplasmic antibody-associated vasculitis: a post-hoc analysis of data from the ADVOCATE trial
阿瓦可班治疗对中性粒细胞胞浆抗体相关性血管炎患者健康相关生活质量的影响:对 ADVOCATE 试验数据的事后分析
  • DOI:
    10.1016/s2665-9913(23)00092-9
  • 发表时间:
    2023-08-01
  • 期刊:
  • 影响因子:
    16.400
  • 作者:
    Vibeke Strand;David R W Jayne;Audra Horomanski;Huibin Yue;Pirow Bekker;Peter A Merkel;Chen Au Peh;Aron Chakera;Bruce Cooper;Jagadeesh Kurtkoti;Daman Langguth;Vicki Levidiotis;Grant Luxton;Peter Mount;David Mudge;Euan Noble;Richard Phoon;Dwarakanathan Ranganathan;Angus Ritchie;Jessica Ryan;Mary Chester Wasko
  • 通讯作者:
    Mary Chester Wasko

Peter A Merkel的其他文献

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{{ truncateString('Peter A Merkel', 18)}}的其他基金

VCRC Genetics and Genomics Program
VCRC 遗传学和基因组学计划
  • 批准号:
    8919980
  • 财政年份:
    2015
  • 资助金额:
    $ 2.5万
  • 项目类别:
Longitudinal Studies for Vasculitis
血管炎的纵向研究
  • 批准号:
    8919978
  • 财政年份:
    2015
  • 资助金额:
    $ 2.5万
  • 项目类别:
Adaption and Validation of PROMIS for use in Vasculitis
PROMIS 用于血管炎的调整和验证
  • 批准号:
    8545674
  • 财政年份:
    2012
  • 资助金额:
    $ 2.5万
  • 项目类别:
Adaption and Validation of PROMIS for use in Vasculitis
PROMIS 用于血管炎的调整和验证
  • 批准号:
    8708763
  • 财政年份:
    2012
  • 资助金额:
    $ 2.5万
  • 项目类别:
Adaption and Validation of PROMIS for use in Vasculitis
PROMIS 用于血管炎的调整和验证
  • 批准号:
    8461762
  • 财政年份:
    2012
  • 资助金额:
    $ 2.5万
  • 项目类别:
Adaption and Validation of PROMIS for use in Vasculitis
PROMIS 用于血管炎的调整和验证
  • 批准号:
    8917091
  • 财政年份:
    2012
  • 资助金额:
    $ 2.5万
  • 项目类别:
Conference on Clinical Research for Rare Diseases
罕见病临床研究会议
  • 批准号:
    8048115
  • 财政年份:
    2010
  • 资助金额:
    $ 2.5万
  • 项目类别:
Conference on Clinical Research for Rare Diseases
罕见病临床研究会议
  • 批准号:
    8245565
  • 财政年份:
    2010
  • 资助金额:
    $ 2.5万
  • 项目类别:
Conference on Clinical Research for Rare Diseases
罕见病临床研究会议
  • 批准号:
    7806262
  • 财政年份:
    2010
  • 资助金额:
    $ 2.5万
  • 项目类别:
Plasma Exchange and Glucocorticoids for Treatment of ANCA-Associated Vasculitis
血浆置换和糖皮质激素治疗 ANCA 相关性血管炎
  • 批准号:
    8537733
  • 财政年份:
    2009
  • 资助金额:
    $ 2.5万
  • 项目类别:

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